Cytoxan and Taxotere ?

JayDub

Hi Kristi-

I'm with you...you have to know that you've done everything within your control to avoid reoccurrence, because so much of this process is outside of your control. The prospect of losing my hair was the one thing that I hated most about the process, and so I went out to find a wig even before I decided to do the chemo. Like Daphne, my first TC treatment went really well but everyone is different. Having a positive "can do" attitude has served me well.

Good luck, and keep us posted on your treatment...

Jessie

sdstarfish

It will be ok, Kristi. It won't be a breeze, but you will get through it!

Daphne and Jessie - you've had no giant side effects? Do you take suppleents of any kind, or have you changed your diet, etc.?

daphne98

Hi Sdstarfish
My onc gives me steroids and anti-emetics for 3 days starting the day before treatment. He also prescribed me Domperidon (Vomex), but I have not used it at all. As, I posted earlier I didn’t feel the need for any painkillers so far. I get the Neulasta shot the day after chemo, but I have been lucky and have not experience any significant bone pains. My onc also gives me Pyridoxine 50mgx3/day (it is B6) for a week. I add myself a standard (bought over the counter) multivitamin B complex tablet/day.
To be honest I have not changed my diet. Actually, I found that I feel hungry and I want to eat larger amounts of food and more often for 7-10 days after chemo. After that I go back to my normal eating schedule. The onc nurse told me yesterday that the increased appetite is a common side effect of steroids (together with wight gain in some women). I have tried to add some L-glutamine in my daily schedule, but nothing close to the suggested doses of 10-30 gr. I have managed to find only Glutamine capsules 500mg (not powder) in London., so if my stomach is OK I try to take 3capsules/day for 10 days. I don't know if they are of any help. If I have no tummy upset I also try to take 2 capsules of Ginseng/day (600mgx2). I have seen a study confirming that Ginseng may boost the energy levels of patients undergoing chemo. I checked it with the pharmacist in my hospital who said that it is fine since my lump was estrogen-negative. She also told me that some herbs, including ginseng, may increase the estrogen production and may not be a good idea for women with estrogen positive tumours. Finally, if I can tolerate it, I also take tablets with iron+folic acid for some days.

I cannot guarantee that all this stuff really helps, but so far I am doing OK overall.
Best wishes

Daphne98

JayDub

Hi Lisa-

My onco put me on steroids (Decadron) the day before treatment, I took them the day of (and then Aloxi in my IV), and then the day after. I did not have to take any additional anti-nausea meds because I didn't feel sick. I have not taken any other supplements other than thyroid meds for a prior issue (low metabolism), and calcium/Vit. D supplements(1200 mg/day) which I was taking previously for ostio issues but I have not been good about taking during BC treatment. I did not really change my diet during the first week following treatment, except that I stopped eating Lean Cuisines for lunch because of the high salt content and the tendency of the steroids re: water retention. During that first week I ate lots of salad (with protein on top), plain yogert with fruit, and peanut butter on wheat bread (instead of my Lean Cuisine). I also started drinking chocolate soy milk for my sweet tooth. During the second week after treatment I have stayed away from salads and anything that might tend to harbor more bacteria. Cereal with fruit, yogert with fruit, peanut butter, a banana and then protein with cooked veggies for dinner. As a result of fewer salads I have gained a couple of pounds, but have continued walking two miles a day, which helps keep the weight down.

New development this week: a bit of queasiness, but ginger ale cures that, and I'm starting to see some hair loss. I go in for blood work today, so it will be interesting to see where my count is...my second treatment is next Thursday. It is so weird, but not terribly surprising I guess, how everyone is reacting differently.

Jessie

Anonymous

L ynn:
How are you doing after completing your TC? I had my first treatment 2 weeks ago and will have my next one on Friday. My hair started falling out last night..that is getting me very depressed.

JayDub

Hi All-

My hair started falling out in earnest on Thursday morning, and in handfulls every morning since. This afternoon I went in for a head shave....it was liberating!! I bought a second wig (brown/auburn with more curls) to add to my short blonde wig which is more similar to my natural hair. I have been trying on my scarves from headcovers.com, and I am relieved that I don't have to worry about my hair falling out anymore.

My second TC is on Thursday and I am hopeful that it will go as well as the first treatment.

Jessie

sdstarfish

Hi, Jean:
I'd have to agree with Jessie. I am just about to have round 3 of TC, and I was really wierded out about my hair falling out around day 16. But after I got it really short, I felt free. I didn't have to worry about strands of hair all over the back of my shirt without me knowing they had fallen out. And showers were much less traumatic. I guess once I got to that point where I was fed up of shedding, I got brave enough to buzz it... OK, so my friend buzzed it...OK, so she brought flowers that day...but still, I did it

joanne_elizabeth

Lisa,

Good luck with number 3, I am right behind you on Wed assuming my counts are okay.

Joanne

emg326

Well, it looks like I'll be joining the rest of you later this month. I think I'm on information overload. There are so many things to think about. I'm 4 weeks out from bilat. mast. and doing great. IDC 1.9 cm,grade 3,er/pr+, her2neu-, oncotype 16. I had thought about skipping chemo because of the relatively low onco score, but I'm 44 with kids 8 and 10 years old. I just feel I need to bite the bullet and do everything I can especially with the grade 3. Any suggestions you have on how to deal with TC is greatly appreciated. I've already learned so much here. Thanks.

daphne98

Dear All
I hope you are getting alright with your treatment and have started seeing some light (or at least a glimpse …) at the end of the tunnel.

I had my 2 TC tx more than a week ago and found it very mild again. In many ways I found it even milder than the first one (despite the fact that this time I avoided all supplements, vitamins etc hoping to make it easier for my stomach ! which seemed to work !). Reading all the stories here in this board about potential side effects I feel very lucky. My first 2 TC tx have been a breeze. I wish I knew the trick and send it to all of you.
I have a strange question: I don’t know if it is my weird response to treatment or what: I have problems with insomnia in the middle of the tx cycle, meaning after day 6. I may not be able to sleep well the days around tx when I take the steroids, but I can control it with a sleeping pill. After that is becomes ok for a while. Actually day 4 and 5 I feel the peak of fatigue (which is not really that bad) and I sleep more that usually. After day 6-7 a weird thing happens: the night I feel tired, my body wants to sleep, but my brain resists, it goes to a crazy hyperactivity with no specific focus. I do everything I can to relax my brain. Simply it doesn’t work. I don’t drink any caffeine, I try breathing exercises, meditation, food, calming music any silly trick I can think, but it doesn’t work. Even sleeping pills that would knock me out completely under other circumstances do not work for more that 4 hours. Has anyone else noticed it ? Is it my way of chemo-brain reaction ? I cannot understand it. Certainly it is not related to anxiety, depression or worrying because in the middle of the tx I don’t feel that way (I am actually relieved that se have not been bad) and it does not last for more that 5-6 days. Also, this kind of brain hyper is nor focused on sad thoughts or worries, to be honest is completely scattered and unfocused which I find even more weird. Obviously, the mornings after I feel exhausted, but I go to work or out and have not tried to see if I can sleep. Would a chemo-induced change into sleeping rhythms be possible ? Any clues ?

Hugs and warm regards to all of you

Daphne98

Anonymous

Daphne98

I am having the same issues. The first few days I had no problem sleeping, only woke to change my ice pack on my head...I had a terrible headache. However after about 7 days I was no longer able to sleep but very tired. I also took sleeping pills 2 or 3 times and still couldn't get to sleep very fast and when did, slept only about 4 hours.

I'm also having nightmares.

daphne98

Thanks Jean
Did you ask your onc what the reason maybe ? My onc and my nurse told me that it is because the steroids, but I think they didn't get it. I cannot be due to the steroids a week later (?).

Daphne98

joanne_elizabeth

I just finished treatment 2 of TC yesterday. I think one of the worst things about it is I end up being there about 4 hrs! Now for the fun part the next few days!
I also have had insomnia since chemo started. I was up about 3 today. I have tried a variety of sleeping pills all to no avail. I read yesterday on a forum that up to 90% of women going thru treatment and chemo suffer from this. When I telecommute I try to nap. Do you women work or are you able to nap? It is extremely annoying to wake up at 3 or 4, but don't know what can help. My onc just suggested taking other meds and suggested it is anxiety. I tend to think it is anxiety and/or depression.
I also asked the onc about 6 vs 4 TCs and she said she knows docs are doing this, but as far as she knows there is no evidence to support doing this.

Anyone going onto aromatase inhibitors after TC? I guess I better start researching them in my spare time!
Also has anyone considered mastectomy or prophylactic mastectomy ? My onc told me yeseterday I will be getting MRIs once a year (if the rulers of america, insurance companies, approve them) but she said that might produce false positives and biopsies, but I guess better that than more big cancers.

Hope all are well and that the weather where you are is better than the 98 degrees in the Phila area yesterday.

Joanne

Anonymous

Joanne:

I will be having my second treatment of TC tomorrow. I glad to see you are up and typing. I felt pretty terrible for about 6 days. The thing that bothered me the most was my head. I have never had a headache like that before. I actually had to keep ice on it day and night for 3 days.

Has your hair fallen out yet? My started to come out last weekend. All I had left today was about 100 hairs. My DH trim them off then shaved my head. Both he and my son think this looks better than the few hairs that had been hanging on.

I have also been having a lot of trouble sleeping. My Ambien isn't working, well not more than 4 hours. I had an RX for Zofran and I was able to sleep with that, but only given 8 pills. It's been impossible to get any more. In fact my Onco wrote the RX for only 8 pills every 30 days. When I asked for more she said next treatment I coudl have 9...goodie. She rewrote the RX for every 22 days. I still will not be able to fill it until day 4...just great. I am think, or hope, I'll feel better by day 4 and will not need it any longer.

I was to have 3 TC's but when I went in for my 1st one, my Dr was no where to be found, the order stated 6. When I saw her on day 6, and asked her about the change, she poo-poo the question. Last week I saw her partner, and we asked the same question but his response was, I am not his patient and he didn't want to interefer with his partner's cases. I wonder why I was seeing him if he was not going to respond to any questions. Unfortunately I have to see him again today as my regular Onc is still on vacation.

As this is being done prior to my mastectomy, I really need to know how many TC's I'll be having to I can set up my surgery. I was told it would be 8 hours or longer and everything must be coordinated. (BS, PS, OR, etc.) DO to the lenght, it cannot be slipped in between other surgeries.

I live in LA and cannot believe how hot it is everywhere else. I bet it's only 75-78 here.

I am triple-negative, so have no idea what I will (or not) be placed on after the surgeries and chemo.

joanne_elizabeth

Hi Jean,
Good luck with your treatment. My head seemed to bother me more (so far) the first 2 treatments. I couldn't stand the pressure of wearing a wig. I am trying to exercise more thru these subsequent treatments, walking first thing AM. I still need naps, esp. cause I am not sleeping well though. My onc said if it continues she will prescribe a different medicine Lunesta, IF the insurance company pays for it.
Most of my hair is gone, I don't go out without a wig or big hat, but I have this odd, very think layer left over most of my head so I look like a gremlin from some kind of sci-fi movie. The little wisps are good with hats so far though. I wear a baseball cap all day in the house. I expect a big shedding again tomorrow, day 4 which is when it happened the last time.
My suggestion is to really push for an answer about the 4 TCs vs 6. As I said my onc told me she knows there are docs doing 6 but she has seen no evidenced based research on this.
I had my mastectomy first, but no reconstruction. I just couldn't handle more surgeries, etc at the time since I had 3 surgeries in April and May.
Good luck getting your answers and hope the headaches aren't too bad. Do you get those bone shots, Lunesta ? I think Lisa traced her headaches to those. I get them as well, but my head so far hasn't been bad enough to stop them.
Best of luck,

Joanne

Harley44

Jean,

Thinking of you and hoping your 2nd TC tx goes well today.

Hugs
HARLEY

Anonymous

Joanne & Harley

Well now I am really mad. I called the pharmacy to see if my Rxs were ready to pick, one being a PRE-MED, and they informed my DH that my insuarnce turned them down. GREAT, one Rx (pre-med) emand is over $500! The other, Zofran, is over $280. I must have the emand BEFORE my chemo whihc is in 3 hours.

Harley44

Jean,

I'm so sorry you are having so much trouble! My insurance is absolutely the pits! There is no way they can deny you the treatment that you need! I am so mad! This makes me beyond angry!

Maybe the nurse at the treatment center can give you a 'sample' to use today...

I'll be watching for another post from you, to see how everything goes...

Hugs,
HARLEY

TenderIsOurMight

Lady Jean,

I don't know if I'm missing something, but isn't your oncologist giving you the Zofran and (sounds like it may be) steroid from his stock and submitting his charge for same to your insurance?

Most insurers separate the charges of pharmaceuticals needed and given in a medical office (like your oncologist's) from those picked up ahead of time by your DH or yourself(often at great cost $$$) and brought to your oncologist. They might not have shared this information with you. (LOL)

Perhaps a quick call to your doctor may clarify things on this. Plus, I truly hope your day goes better and understand what you are saying about the Taxotere side effects: it brings back so many memories.

Hope this helps,
Tender

Anonymous

Tender:

"Quick call" not exactly. My DH has been on the phone all morning. No, I do not get any drugs from my oco. I have my chemo at the infusion center at Cedar's. My onc mearly writes the orders for treatment. I have been seeing them every Thursday, chemo every 3 weeks on Friday. I had recieved a Zofran RX for my first chemo 3 weeks ago...8 pills. I needed to refill it for this treatment, but my onc had made out the RX for every 30 days. As they would not refill it, she attempted to have it changed to every 22 days, but they still refused to refill it on time for my chemo. The Pharmacy is closed on weekends, unbelievable for LA ...22 days is Saturday. I will have to wait until Monday to pick that one up, or pay over $280!.

The Emend is another story, my insurance will not pay for it. They claim, if my Dr really believes I need it, it must be placed in front of a some board and get approval...that will take another week. Again, my chemo is at 3:30...3 hours from now. I am suppose to take this drug B4 I have my chemo.

As I am an attorney, I realize there is a major breach here. I have had severe reactions to meds and once nausia sets in I am on the way to a cardiac arrest! (I had to have a pacemaker implanted a few months ago at a cost of over $70,000.) You'd think they would realize not to fool around with my meds but oh no...here they go again. I told my DH that if I die, he will become a very rich man...but...I'd would much rather have the darn meds and get well.

Harley44

Jean,

I'm thinking about you, and praying that you get the meds. you need! This is an outrage!

Hugs,
HARLEY

TenderIsOurMight

Oh, Jean,

I am so, so sorry for your insurer's folly. It is a shameful situation to place on a patient undergoing active treatment as well as your DH.

Perhaps, when this day is over, and you and he have some quieter moments, you might consider switching to an oncology group that does IV in-office chemotherapy. Would this avoid the insurance end-run?

I do hope your second Taxotere and Cytoxan causes less side effects. Hang in there. You can beat this Beast and hopefully your insurer as well!

Tender

sdstarfish

The bone shot is called Nuelasta, Joanne.(That was very cute!) Lunesta is a sleeping drug. But you're right - the headaches were lethal, and this round since I refused the shot, I don't have them. Now I just have focus on keeping my counts up.
My main TC problem right now is my ulcer. And that is definitely a cumulative problem in my case. The chemo eats through more and more of my stomach lining each round. Big major ouch

I know what you ladies mean about not sleeping. I think it is a chemo thing, but on top of that the Nuelasta shot makes your head feel even worse when you lie down.

joanne_elizabeth

Lisa,
Sorry about the meds mix up, it is chemo brain for sure, can't remember passwords for bank accounts,etc Yikes! My onc prescribes the bone shots (my DH injects me) and is saying we will try Lunesta next for sleeping. Yesterday I mostly slept from noon til 4 AM today.

Jean,
My heart goes out to you. I have had a couple hissy fits on pharmacists along the way, but eventually I got the meds. I hope you got what you needed. This chemo is bad enough without the anti-nausea meds. Let us know how you did. That is such a shame.

sdstarfish

Yes, Jean, we're all thinking of you. Keep us posted.

Harley44

Hi everyone,

My first tx with TC seems to have gone ok, since I have read that some others here have had a lot worse problems than I have. I AM very depressed though, thinking about losing my hair! I guess it's like this: I lost my breasts, and now my hair, the two things that make me a woman! How do you get over that? I know I'm getting reconstruction, but still... I don't like my hair, but when it comes back in, it may be even worse, thin and gray.

I will have my 2nd tx of TC on 8/28, and it will be a long day, since I go in at 11:00 for bloodwork (again!) and then I see the doc (I hope I don't have to fight with him again) at 11:45. On my schedule, it says that I will not have my tx until 1:00. I am wondering why the delay from my onc appt. at 11:45 until 1:00 for the treatment?? Unless they will give me a break, so I can go get lunch! lol

Also, have any of you gotten some kind of heart scan to make sure the Taxotere isn't damaging your heart? I read that there is still a chance of heart damage with this drug combo, but "not as much" as with Adriamycin.

Just wondering... I may have to fight to get a test to make sure my heart is ok.

Well, I better go get some breakfast. Hope everyone is feeling good today.

Jean, I see you got your treatment, YEAH!! Will you see your doc soon, to find out about the mix up on the # of treatments you're getting? Hope you are doing ok.

We can do this!

HARLEY

Cynthia1962

Hi Harley,

I had a MUGA scan but it's because I was having the Adriamycin. I don't know if my onc does it otherwise. When are you getting your port? Did your chemo nurses have trouble finding your veins? The reason I ask is that if you have decent veins, you might consider skipping the port since you only have 3 more txs to go. I'm glad that I have a port, but if I could have skipped it, I would have. It has an ugly scar that itched for months. It was uncomfortable and I couldn't lie on it for weeks after it was put in. I also had it put in during my lumpectomy surgery so it didn't require a separate surgery. My surgeon plans to take it out in her office with just a local. So, not looking forward to that! IMO, it's just one more thing, if you know what I mean.

My hair is coming in nicely and I don't see more gray than before. The ends of the hair on top are kind of white or blond, but the rest of the hair is dark brown which is darker than it was before it fell out. I'm getting curious to know what it's going to end up like. My hair style was very short so it shouldn't take too long to get back to that length.

I hope you feel better soon!

Cynthia

Harley44

Hi Cynthia,

I thought I had seen others post who were getting Taxotere and they also had MUGA scans, so I'm kind of confused! I know that Adriamycin is the one that has the most potential for heart damage, but still would like to be sure that these treatments aren't going to do some permanent damage!

I would like to skip the port, too, but my 1st infusion, it DID take TWO nurses 3 or 4 sticks to get the IV into a vein. I don't have BAD veins, but just since all this started, it seems the nurses can't find my veins... go figure! I've never had trouble before, and I get lots of blood work done, because I have a thyroid disorder, and I'm going for constant checks. I'm going to see my surgeon on Tuesday, and I'll ask him if there isn't something easier he can do without another surgery. He wants to put the port in at Columbus Regional Hospital, in Whiteville, NC. It's right up the street from his office. I'm just terrified of having my veins collapse, which I have read can happen with chemo. I hear you... the last thing I need is another surgery!

Some people tell me that if you have straight hair, it will come in curly, mine was always very straight, and I would like some curl! lol Everyone is different! I bought a wig, and it's curly, dark brown with blondish-reddish highlights. It's kind of cute, but I guess it might be too uncomfortable to wear, and I just can't bear the idea of going out au naturale! Although, I guess I'll get used to it.

I am feeling better, thanks. I thought I would be EVEN MORE depressed, since my dh had to go back to DC today. But, so far, I'm feeling better, physically and emotionally.

I'm hoping that the rest of the txs will go as smoothly as this has been so far, and since Tuesday, it'll be a week, I'm thinking the worst is over.

Your last tx is Aug. 21st?? Wow, that is coming right up! So that will be your LAST!! YEAH!
You are such a positive person, and such a font of helpful information, too! Thanks for all the advice, and the support!

Thanks
HARLEY

Anonymous

Harley'

I think it will be 6TCs. My onc woudl give me a driect answer, nor would her partner the week after, but last week we haf a break-though....accidently. He asked me how I felt and I said lousy. still a little nasuated and hadn't been able to seat much, His response was well theres; tomorrow then one more and your'll be half way thru....sounds like 6, to me. But the bad news is he hadn;t set up my neulastia shot and at the hospital there was a lot of hush=hush, you didn't hear this from me stuff. I should get a new Dr because my onc may be asked to leave ! Guess She has had issues with ohter paitents and those at the hospital.

Harley44

Jean,

What will happen if your doc has to leave? Will you be able to see her partner, or one of the other oncs at the hospital? Gee, and you just started your treatments! I feel for you, it is stressful enough to be getting chemo, but to not have any idea what dr. you'll see is another thing... well, your insurance and my insurance can be frustrating enough, oh, no, don't get me started! lol

I do wonder how they decide how many txs we need? I just assumed everyone would get 4 of TC! I'm glad that I only have 3 more to go!

How are you feeling? I hope this one went better than the last, with less se's for you.

I'll be seeing my surgeon about the port on Tuesday.

Thinking about you,
Hugs
HARLEY